Last week, the IBD community took part in what is known as Invisible Illness Awareness Week. An invisible illness, as the name implies, is one that cannot be seen. While all may seem calm and quiet on the outside, a storm is raging on the inside, a storm that very rarely subsides for some of those to whom such a disease was given. And it can often be difficult to understand for the family and friends of those living with an invisible illness. Until you are actually diagnosed with one yourself, you never fully understand.
With it being such a celebratory week, it got me thinking about my own life with a chronic illness. I was diagnosed with Crohn’s disease at the young age of ten, yet I still have never shared my story with anyone… until now. I’ve spent the good majority of my life since then trying so hard to hide my disease from everyone. In the past, I had always made up excuses to my friends as to why I couldn’t go out somewhere. Or why I had to take medication at the same time every day after lunch during elementary school. I never wanted anyone to find out. Not my teachers. Not even my closest friends. No one. And I felt so alone because I felt like I had to keep it inside. I mean, when you’re in your preteen years, the last thing you want to do is tell everyone you have an intestinal disease. At that age, neither you nor your friends truly understand the gravity of such a circumstance. Then again, people I know now at 21-years-old don’t really understand it either. Which is why, after almost twelve years, I’m finally sharing my story, in hopes that I may be able to educate those who may not be familiar with the nature of Crohn’s disease; that we can conquer the social stigma that inevitably comes for the people living with invisible illnesses; and that anyone reading this might find some comfort in knowing they are not alone.
My story begins in December 2002, right around Christmas Day. My mom, dad, and I were getting ready for a Christmas program that was being held at our church that night. We were supposed to be meeting up with one of my friends and her family.
My mom was the first to notice my appearance, and how much weight I had lost. I, on the other hand, had never actually taken notice of the fact that I had been losing weight. It seemed to come on so gradually that I almost missed it completely. So, I took a good hard look at myself in the mirror. I remember thinking, ‘Wow. I really am skinny. Like, abnormally skinny.’ I had always been naturally thin growing up, so I shrugged it off at first. But this was a whole new level of thin that could no longer be ignored. That’s also when I began to notice just how pale and skeletal I had become. I feverishly began to worry about my weight and appearance, asking my mom for reassurance. So many questions ran through my mind at that moment. Should I be doing something about this? What should I do? What’s happening to me? This was the very moment I knew in my heart something was wrong. Of course, other than the rapid weight loss, there was never any indication that I was sick. It would only be a few weeks later that I would finally find out what was going on with my body.
I had been in excruciating pain. At times, my stomach felt like someone was digging a knife into it. Pain so bad, it would literally bring me to my knees. The weight loss continued. Everything I ate, I struggled to keep down. I had been running to and from the bathroom multiple times a day. And I had absolutely no energy. The couch in front of the TV had become my new home; I would often find myself sleeping there for most of the day. Luckily, it wasn’t long before we got an answer to the question we had been asking ourselves for weeks. When I finally went to the doctor, he took one look at me, heard my symptoms, and immediately gave me the official diagnosis: Crohn’s disease. He ran some blood tests to be sure, only to confirm my worst fears a few minutes later. This “Crohn’s disease” had been the cause of all the strange symptoms I had been experiencing. At the time, there was really only one thought that ran through my mind: What is Crohn’s disease? I had never even heard of such a thing before. I thought it was just something that could be fixed with a magic pill, and I would be fine after a few weeks. Yeah, I was definitely wrong about that one!
I was immediately put on my first round of medications, consisting of Pentasa (an anti-inflammatory medication) three to four times a day, and azathioprine (an immunosuppressant) twice a day. Pentasa and azathioprine – also known as Imuran – are the least potent, most base-level medications you typically start off with when you are first diagnosed with inflammatory bowel disease. For me, they definitely did their job… for awhile anyway. After being on the medications for a few months, they stopped working. My body was beginning to build up a resistance to them, and my initial symptoms were returning. This resulted in an increase in the dosage, bringing the grand total to about five pills at a time, four times a day. Add to this, in later years, steroids that caused me to gain an unhealthy amount of weight, making me look like a blonde chipmunk preparing for hibernation; antibiotics that had only made the problem worse in the long run; low-dose chemotherapy (thinning hair and brain fog, anyone?); and the big guns: biologics. Humira was my drug, only not of choice. It had much the same effect as the low-dose chemotherapy treatment. The suppressed immune system. The fatigue. Humira basically let any kind of pathogenic bacteria – which I will go so far as to say is the cause of inflammatory bowel disease – live rent-free in my gut. And, of course, sticking myself with a needle every other week wasn’t too pleasant either.
This past year, back in March – right after my eye surgery to repair a retinal detachment – my symptoms got so bad that I was forced to go on an elemental diet. For those of you that aren’t familiar with it, an elemental diet is one that consists of drinking five to six healthy, high-protein, high-calorie shakes a day, predigested for easier absorption of nutrients. This was actually a positive, considering my digestive system was finally getting a much-deserved break. From around mid-April to early August, it was all protein shakes, all day, every day, in addition to other more alternative, holistic approaches to healing. As for the Humira, well… I just kind of stopped it. Quite unceremoniously, might I add. But stopping any and all of my medications was the best decision I’ve ever made concerning my disease thus far.
As of August 8, 2014, I’ve been following what is known as the Specific Carbohydrate Diet, developed by pediatrician Sidney Haas in the 1920s from his research on the effects of diet and nutrition in children with celiac disease. Pioneered by biochemist Elaine Gottschall after her daughter was diagnosed with ulcerative colitis – and was facing total removal of her colon – the Specific Carbohydrate Diet, much like the popular Paleolithic diet, consists of only the simple, whole, real foods our ancestors would have eaten. The science behind the diet is quite extensive, so I won’t bore you with the details. But the main premise of the diet is to completely eliminate all complex sugars and carbohydrates. These are known as either disaccharides or polysaccharides depending on the overall makeup and complexity of the sugars and carbohydrates.
“So, what exactly do you eat?” I get this question all the time. I mean, obviously, I survive off of water, air, and sunshine! DUH. But, seriously, I just eat foods that are found in nature, not in a package. The real, whole. nutritious foods God gave us to nourish and heal our bodies.
This day and age, we are entirely too reliant on “magic little pills” to heal us and to get us through the day. Then again, they don’t really do any healing, do they? Nope. They only serve to cover up the symptoms. They are a Band-Aid over a knife wound, a thin strip of tape holding two broken bones together. At some point, something has got to give. Eventually, you will bleed to death. Eventually, your bones will break again. And there comes a time when you have to realize just what you’ve been putting your body through. A choice has to be made. Do you accept a future of chronic pain and disease? Do you allow the medications enough time to work their side effects into your system?
You finally open your eyes to what it really means to heal from the inside out. You learn that true health, happiness, and healing come from the Lord, not some doctor. You put all your faith and everything you’ve got in Him, trusting that He has brought you here, to this very moment, for a reason. A special reason that only He knows about. And I choose to follow Him in everything. I choose to follow His plan, and not mine. I choose health. I choose happiness. I choose faith.
I choose life.